Little Reminders | Peripheral Neuropathy after Breast Cancer Treatment

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Back when I talked about my cancer book, I mentioned that, among other things, I used it to keep track of my neuropathy symptoms.   Peripheral neuropathy– numbness in the hands and feet– is a common side effect of taxol, one of the chemo drugs I was given.  My oncologist had told me that it was something that  I needed to keep track of– it is one of the most common reasons for dose reductions or treatment delay during taxol treatment. She stressed that I shouldn’t worry about a little tingling, but to be sure to let her know if it was causing such a problem that I was dropping things or having balance problems.  (Yikes.) Fortunately, it never got that bad.  It started in my right foot– first the big toe and gradually over the eight weeks it crept all the way to my pinky toe, causing my entire fore foot to feel funny for an hour or so at a time.  Eventually, I noticed it in the fingertips on my right hand, too.  I should point out that it doesn’t hurt.  It’s not that “pins and needles” feeling when your foot falls asleep and it seriously hurts to put weight on it.  It’s more like when you’ve been outside in winter too long. (Snowy, 18 degree days like today. I’m over you, winter…) That’s how my toes felt– when you don’t really have frostbite, but even after your toes start to warm up, they still feel really weird.  A little numb, and just plain weird.

Thankfully, as my blood counts ventured up and my hair began to grow back after my last chemo infusion, the neuropathy began to subside, too.  Fewer toes and fingers were involved, it didn’t happen as often, and it didn’t last as long each time I noticed it.  I’d heard about some people who struggle with chemo-induced peripheral neuropathy for years, even forever, but figured I’d be in the lucky symptom free group since my symptoms started to dissipate so quickly.

Lately, though, I’ve been noticing that weird feeling in my right foot again. (Has it always been there and I’m just noticing it, or is it new?  Not sure.)  Usually just in the big toe and the ball of my foot, and it doesn’t last for very long.  Again, it still doesn’t hurt, and it doesn’t affect my ability to walk at all. Honestly, it’s probably the kind of thing that I wouldn’t really even notice if it weren’t associated with cancer in my mind.  But my brain has been trained to notice and note all kinds of super minor annoyances. Because cancer. Thankfully, it’s not an indicator of recurrence, it’s more like a lasting reminder of the fact that chemo does some serious damage.  Which, I guess, is just what I wanted the chemo to do, so that’s good, right?  They say (I really hate that phrase, “they say,” but there it is…) that most chemo related side effects subside relatively quickly after treatment, and rarely linger past two years.  Neuropathy is the exception.  Since mine is still hanging around, I’m guessing there will always be times when the tingling in my right foot is just another little reminder of breast cancer.

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On Sick Leave and Going Solo

going solo PET scan breast cancer

The teeny tiny lead lined room where my radioactive self got to hang out for a while before my PET scan

It’s been two years since I finished chemo, which means that I’ve had the opportunity to chat with lots of ladies who are going through it themselves since then.  Chatting about all the trips to chemo and the appointments with the oncologist and surgeons, many ladies have commented that their husband is coming with them to every single one.  I don’t usually offer anything at this point, but inevitably, they ask.  “Did your husband come with you to every appointment?”  I think they are all shocked when I answer no.  He did come with me to the appointments where they suggest someone come.  (That’s never good when a doctor suggests you not come to the appointment alone…)  He was there at the first appointment after the diagnosis with the surgeon, the “big” appointment with the oncologist where we discussed treatment strategies, and the appointment where we talked about surgical options.  And of course, he took time off anytime I had surgery.  But otherwise, I went solo to the appointments and took a friend to chemo.

So this is not the point in the story where you should feel sorry for me because my husband didn’t care enough to take the time off to come with me.  In those first “big” appointments, he came along and the doctors talked to both of us, encouraging us both to ask questions.  But breast cancer is my thing, I already speak that language.  What they were saying made sense to me, there were no surprises because I was expecting it all.  I didn’t need him to take notes so that I could look things up later (that’s a great reason to have someone come along, by the way!) and he knew that I would remember the details that I needed to pass along to him.  I dragged Sally along to a couple of the early diagnostics, but quickly learned that she mostly would have to wait a long time by herself.  The waiting areas for mammograms, MRIs, and especially PET scan keep the patients separate, so there would have been a lot of sitting solo– probably not worth burning sick leave.  And I have been blessed to have so many wonderful friends, it was easy to find someone to come along with me to chemo.  Clay always offered to go, and I know I wouldn’t have had to ask twice for him to leave work to join me.  And yet, I always assured him that I was fine to go on my own.

There are a lot of “what ifs” in cancer.  What if chemo made me really sick? What if it was too hard for me to keep up with the kids? What if it was too hard for me to take care of myself? And of course, there was always that lingering, always unspoken, “what if.”  What if the treatments didn’t work and I finally ended up with my body as a battleground, managing the effects of ever increasing treatments while the cancer wreaked havoc on my vital organs?  My liver, my bones, my brain? Then I would need help.  Lots of help.

I can remember years ago being in the choir room at church, where federal workers were asked to consider donating leave to a member whose husband was nearing the end of his life.  She was running out of paid sick leave, but other employees could transfer theirs so she could continue to be paid while she stayed at home with her dying husband.  That memory floated in and out of my mind all throughout my treatment.  There might be times when I would really need Clay to drive me to appointments, to keep track of medications, just to help me through my day.  I hated the idea that he might feel torn between being able to provide for our family and being able to care for our family.  I wanted him to go to work while he could, so that he didn’t feel like he had to if I really needed him.

Didn’t mean for this post to be a downer.  I was happy going to the appointments on my own.  I was caught up on local interest stories, the latest fashion, and the newest makeup trends thanks to all the magazines I read in waiting rooms.  (I’m a bit behind the times now, I’m afraid!) I really liked all my doctors, and was happy to chat with them. As soon as I left, I would call Clay, my mom, and Sally to give them all the latest updates.  And then I would usually make one more call to whomever I was meeting for coffee or lunch to let them know I was on my way. Because even though I didn’t mind seeing the doctor solo, hanging out with a friend is always my favorite thing!

One thing to remember, though, especially if you are going through treatment– everyone is different, so we all “do cancer” differently.  I loved taking a girlfriend along to chemo– three or four hours to chat and catch up, discuss Downton Abbey, look at magazines, and giggle like girls do. I’ve had friends who loved spending that time with their husbands, looking at it almost like date time.  Maybe not the most romantic, but time is time, my friends.  And I’ve had friends (mostly those with toddlers at home!) who cherished being able to go to chemo completely alone. We don’t all have to do it the same to do it well.

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Happy Birthday to Me | NARS Lip Pencils from Sephora

 

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My birthday is in December– quite frankly, I can’t believe that I’m 38. That just sounds older than I feel. Not that I’m obsessing about it at all, but some nice presents surely make it better!  I do love shopping at Nordstrom, but when it comes to cosmetics, I’m starting to become a Sephora convert.  They have a similar generous return policy, and they have a beauty insiders club that lets you earn points for really nice rewards– smaller sizes of some of their best products– things I actually want!  But best of all are the annual birthday gifts.  I discovered several of the products that I now love and faithfully buy that way– Watts Up highlighter by Benefit and Sugar Fresh lip balm are probably my favorite birthday gifts.  Until this year.

I’m a huge fan of NARS cosmetics– they are highly pigmented and deliver deep, lasting color.  The velvet matte pencil in Cruella is the red lip color I’ve been looking for– a bold red with just enough depth so that it’s not obnoxiously bright.  The satin lip pencil in Rikugien is more of a neutral, glossy color that’s a great everyday staple.  Two new lip colors– a perfect red and a glossy neutral– make me a pretty happy birthday girl.  Happy birthday to me indeed!

*This is the 2015 birthday gift– even though I was celebrating my 2014 birthday, it was January before I made it in to Sephora. Having noticed my love for NARS, the sales associate let me choose, and of course I went home with this one!

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Me and Ibuprofen? It’s Complicated | Pain Relief after Breast Cancer

ibuprofenI woke up the other morning with a headache. Back in the day, I’d have groaned about it while I walked to the kitchen, popped a few ibuprofen, and then I’d get on with my day. But now? Well, it’s complicated.  To be perfectly honest, I’ve always had the occasional headache, only rarely would they last after I took a few ibuprofen. The last time I saw my oncologist, she asked about headaches and I told her that I have them occasionally. Of course, she asked whether they went away when I took ibuprofen, and I had to admit that I don’t really take it any more. I knew she wanted to know because a headache that is controlled by over the counter meds doesn’t indicate a scan-worthy concern.

So why won’t I take ibuprofen? It’s not because I’m anti-meds. Of course, I know they can be misused and abused, but I’ve always been one to (responsibly, of course) embrace whatever the pharmaceutical industry can give me. (Narcotics, an ambien, and an epidural made for a nearly blissful birth experience!) But since I had cancer, I hesitate to take something even as mundane as ibuprofen.  Not because I’m tired of taking pills and just don’t want to anymore. Though I think that’s a pretty reasonable reaction.  But once she had asked, I had to admit the reason out loud.  I want to feel the pain.  Not because I want to suffer.  But because I want to know just how much my head hurt, and for how long.  I feel like if it’s the start of a problem, I want to know right away.  Of course, my oncologist told me what I knew deep down. I should take the meds.  What I need to worry about is pain that can’t be controlled by the meds or that lasts for a couple of weeks.

So the other morning when I woke up with a headache? A quick check of my P-tracker (yes, there’s an app for that) told me that it was most certainly a PMS headache– something I’ve dealt with since long before I had breast cancer.  So I took a deep breath, told myself not to worry about it, and swallowed my ibuprofen. And what do you know? The headache went away.

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Two Years and Counting | Post-chemo Pixie Grow Out

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We all have dates that we remember.  Some very important, some rather mundane.  I could never remember dates for history class.  But I’ve got a slew of dates floating around in my head.  March 8– my first date with Clay.  May 1– the day I had to finally send in the acceptance to the University of Illinois (it was not my first choice for college, but I couldn’t get the scholarship support to go elsewhere.) July 18– my first best friend’s birthday, and we haven’t lived in the same town since first grade.  October 5– the day I found out I had breast cancer.  February 1– my last day of chemo.

Wow, that was a lot of writing to get to the “it’s been two years since my last day of chemo” line.  But, there you have it.  Two years from completely bald to Rapunzel-like hair.  I was shocked last week when someone compared my hair to Rapunzel’s– I was thinking of the long blond braid that reached to the base of the tower.  Apparently in Tangled, her hair is cut at the end of the movie, and as it turns out, my newest style looks very much like hers.  (Like how I tried for a concerned, wide-eyed stare just like hers?)  And here, I thought growing out my hair would take forever.  All I needed was two years to get hair just like Rapunzel’s.

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On Being Med-Free | Tamoxifen and Long Term Breast Cancer Treatment

run lipstick chemo tamoxifen breast cancer

Forgive the old picture, but I don’t have any current pics of my meds.  Because I don’t have any meds.  Which is sort of a blessing and a curse.  It’s great that I don’t have to remember to fill a prescription and remember to take a daily pill.  It’s really great that I don’t have to deal with side effects.  What’s not so great, you may be wondering? I’m not actively doing anything to help prevent a recurrence.  If you know someone who’s had breast cancer and finished her treatment, odds are good that she’s taking a pill every day for the next five or ten years, and so it’s an obvious question to wonder why I’m not.

And this is where we go back to the science.  Remember when I explained about how my breast cancer is called triple negative? (Yep, if you look at that post, I used the same picture! Sorry!) Pathologists look at three main receptors when classifying breast tumors: ER, PR, and HER2.  Since my tumor didn’t have any of the three, I am considered “triple negative.” Tumors that express ER or PR are considered hormone responsive, and they make up 60-70% of newly diagnosed breast cancer cases.  These tumors use estrogen to grow, which means that shutting down their ability to use estrogen can shut down tumor growth.  No tumor growth means your tumor won’t kill you.  Obviously, hormone-targeted therapies have made a significant impact in the management of hormone responsive tumors.  There are several ways to manage hormone responsive tumors long term.  Tamoxifen is the most commonly known, and it acts as an anti-estrogen in the breast and effectively shuts down estrogen signalling.  Other drugs (raloxifene, toremifene, and fulvestrant) work in a similar manner.  Aromatase inhibitors halt the production of estrogen (letrozole, anastrazole, and exemestane) and can also be used to starve the tumor of estrogen.  (Fun fact– a woman’s body uses testosterone to make estrogen using an enzyme called an aromatase, so aromatase inhibitors prevent that conversion).  In premenopausal women, ovarian ablation (with drugs like gosserelin or leuprolide) can be used in conjunction with aromatase inhibitors, and have recently been shown to be very effective.  These treatment regimens are long term– five years used to be the standard, now some studies indicate ten years is even better– and are not always tolerated well.  Like any treatment, some women don’t have many side effects, but for some women, the treatment causes significant quality of life issues leading them to choose to stop treatment.  (This is certainly not a decision to be made without talking to your doctor! I’m just saying that it happens, good or bad…) Most women deal with some side effects that fall into the undesirable category, but are considered a reasonable trade off for the reduction in risk of recurrence.

All of that is to say that at least 60-70% of women treated for breast cancer benefit from long term hormonal treatment.  But for those of us without hormone responsive tumors, there is no reason to take the meds.  Our tumors don’t use the estrogen, so blocking it won’t help us.  And herein lies the blessing and the curse.  I don’t have to take daily meds and deal with the side effects, which is awesome.  But I’m also left in the position where there is no medication that I can take that will reduce my risk of recurrence, and that’s a little less awesome.  I’m just going to count on the fact that the chemo did its job and keep running, running, running.  (I do wish it would warm up, though.  It’s a little cold and icy to enjoy running right now!) I can’t take tamoxifen to help me, but exercise has been shown to reduce recurrence risk.  And so I will run.  As one triple-negative friend put it: “Running is my tamoxifen.”

For a more complete discussion on hormonal therapy for breast cancer, check out what this fact sheet from NCI (National Cancer Institute).  It’s complete and not overly technical.

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The Great Pixie Grow Out Continues… | Hair Growth After Chemo

post chemo pixie grow out run lipstick chemo

At this point in the great pixie grow out, my hair pretty much looks different every day.  This afternoon I pulled on my trusty smartwool beanie to head to the bus stop, and I decided it looked kind of cute. I mean, if it’s good enough for Tom Brady to wear to a press conference, I should be able to leave it on inside, too.  Mine’s not quite as vintage as his stocking hat, but since it’s the hat I bought what seems like another lifetime ago as I prepared to lose my hair, we’re going to go ahead and call it vintage.  It does look a bit cuter now with some wispy hair sticking out than when I had it pulled tight over my bald head, but it served me well then, and it’s still a handy little hat.

growing out a pixie run lipstick chemo

Since it really started growing, I have been getting my hair cut every 5-6 weeks because it gets so bulky, and I’ve always wanted my haircut to look intentional.  It would be a little longer if I’d have just never cut it, but I’ve really loved a lot of the styles that I’ve had along the way, and it never looked like an awkward grow-out phase.  But when I got my haircut just before Christmas, it was starting to get long enough that it wasn’t quite as bulky, and the haircut didn’t help the shape nearly as much.  And so I did something very brave. Or very stupid. I set my next haircut for 8 weeks. (Which is two weeks away.)  Yikes. Lately, I’m wearing it straight more than I’m sporting the polished weather girl coif, and occasionally I bust out the sprouty pigtails or the trusty bandana.  I have another new style that someone compared to a Disney princess (you’ll never guess!) that I”ll have to show off next week!  Stay tuned for more fun as the great pixie grow out saga continues…

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Perky or Just Dense? | Breast Density and Breast Cancer

I really enjoyed attending the Society for Women’s Health Research meeting on mammography last fall.  Since I’m still not old enough to really need a mammogram, I never spent much time worrying about one, or wondering what it would be like or what the results might be.  Of course, women will always worry about the discomfort of the procedure.  And then there is the anxiety of awaiting the results.  My mom gets her mammogram done at a breast center where a radiologist reads the film while you get dressed and then discusses the results with you that day.  If there are any follow up procedures (ultrasound, biopsy, additional mammogram images) they’re done before you leave.  That is FABULOUS. And also super rare.  Usually, you get a letter in the mail a week later, and it’s not always all that easy to interpret.  Depending on your state, this letter might include details on your breast density, but it doesn’t tell you what breast density means to your health.  Information without context.  That seems useless and entirely unfair to me.

The above image shows what density looks like on a mammogram. While we think of younger women having denser (or at least perkier!) breasts, that’s only partially true.  You are more likely to have dense breasts if you’re younger, but there are plenty of old women who have dense breast tissue.  (Perky does not equal dense.) Breasts are made up of fatty tissue and the ducts and lobules that make milk– more ducts and lobules make a breast more dense. Normal fibrous tissue also contributes to  breast density. Just like an x-ray shows bones through the skin because they are so much more dense than muscle, etc., a mammogram film shows a tumor as a white mass because the tumor is more dense than the surrounding tissue.  In the fatty breast (medical term, no judgments here!) you could clearly discern the white mass of a tumor, right?  But on the far right in the dense breast? How can you tell what’s dense tissue and what’s a dense tumor?

The problem with dense breasts is not only that a tumor is harder to see with traditional mammography. The other problem– women with dense breasts are (very slightly, don’t panic) more likely to develop breast cancer. So, more likely to get cancer which is harder to identify with traditional screening.  Not so good.  Women with dense breasts are often called back after traditional mammography for an ultrasound, which is an effective way, together with the mammogram, to discern tumor from normal, dense tissue.  But as I learned at the Society for Women’s Health Research meeting, the use of 3-D mammography makes a huge difference to women with dense breasts.  Not only does it reduce the recall rate for additional testing, it finds more cancers.  If there is a tumor, it’s more likely to find it, but it’s not likely to send you for additional tests that you don’t need.  Win-win.

So the take home message? Pay attention to that line on your mammography report.  Don’t worry about it, but if you are in the “dense” category, consider the 3-D mammogram next year.   And if your doctor recommends that you come back for an ultrasound after a traditional mammogram because your breasts are dense, don’t worry too much about that either, it’s not likely to be anything, but will be able to tell you for sure.  Just don’t let the fact that traditional mammography isn’t as effective for women with dense breasts deter you from your annual mammogram.  They really do save lives, whether you are perky or not so perky, dense or fatty.

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My Ambivalence of Normalcy | “Normal” After Breast Cancer

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After I was diagnosed with breast cancer, I can remember that maintaining normalcy, especially for my family, was one of my main concerns.  I didn’t want to hide the fact that I had breast cancer, and I knew that things would be different for everyone.  But, for the most part, I wanted things to feel normal for them. I wanted to help with homework, drive to gymnastics, play games, and do Girls on the Run.  But I wanted things to be normal for me, too. Not to pretend that there was no cancer, but to give me some sense of control.  I wanted to be stronger than the cancer, I wanted to be my normal self in spite of the breast cancer. That’s how this blog got its name– I was determined to keep things normal by going for a run and always putting on some lipstick, even if chemo was my next stop.  It did take a lot of energy to be nothing more than normal, but it was energy that I wanted to expend.

But now I have a love/hate relationship with the word normal.  Exactly six weeks after my mastectomy, I went out on my first run post-surgery.  That  night, I was standing in the kitchen, and I remember Clay congratulating me on my first run, and he asked, “So is everything back to normal now?” I bristled. Was I supposed to be the same as before? Was he just hoping that he was off dishwasher-unloading duty?  Of course, I know his question had more to do with the relief that I was healthy and cancer free– free of treatments and their restrictions and side effects– than the dishwasher.

But back to normal? No.  Of course, physically, I don’t have any more restrictions.  I can reach what I want, lift what I want.  I don’t take any medications. (More on that in a future post, if you’re curious.)  But seatbelts still irritate me. My hair is growing out and driving. me. crazy. I have scars and tattoos. I have worries that no elementary school mom should have.  So maybe  a new normal, then? Lots of people love that phrase. I am not one of them, for the record.  I guess technically I have a new set of things that are part of my “normal” everyday life.  But to embrace the phrase new normal seems to acknowledge the fact that there’s no going back to the old normal, there’s no going back to that girl.  The girl with long hair who blamed headaches on PMS. The girl who went for a run because she wanted to lose ten pounds and be healthier, not because she feels like she’s inviting a cancer recurrence with her couch potato ways. The girl who bemoaned having to wear her cute little balconette push-up bra.  She’s gone, and sometimes it makes me sad.

Of course, there are a lot of good things about the word normal.  In fact, when I enter the auspices of Virginia Hospital Center, I crave the word.  My MRI? The PET scan? Normal.  Blissfully normal.  All my genes? Plain old vanilla normal. At support group? It is so reassuring to hear that what I’m feeling is completely normal. Normal is good.  Normal is just, well, so normal.

And so I find myself walking a very fine line.  Between loving and hating the word normal. But I continually strive spend more time considering the good, plain old vanilla type normal than mourning the old normal that is gone.

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Genetic Testing for Breast Cancer | Beyond BRCA

I mentioned before that early on, I went through genetic testing for BRCA1 and BRCA2. This genetic testing is only recommended for women with a strong family history of breast and ovarian cancer, and by those standards, I would not be a candidate.  However, women with mutated BRCA genes do tend to develop breast cancer at a much earlier age, so my surgeon recommended I undergo testing.  While Angelina Jolie has certainly raised awareness not only about the existence of BRCA genes but also the option of prophylactic surgery to reduce cancer risk, and Mary Claire King, who discovered that BRCA1 and BRCA2 mutations play a pivotal role in many families with hereditary breast and ovarian cancer has suggested universal testing for all women at age 30, I feel strongly that any genetic testing should be done only after a visit with a genetic counselor. (And, incidentally, I don’t agree with universal BRCA testing.)

Since my diagnosis, genetic testing has come a long way.  Science and technology move so quickly, and only two years really does make a huge difference.  I tested negative for BRCA mutations, and while that was a relief, it wasn’t a shock.  But in my semi-annual check up with my oncologist this fall, she shared with me that there are more expanded gene panel screens available now that might be worth exploring.

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I set up an appointment with the genetic counselor and gathered my family history. You  need to be prepared for these meetings, the more information you have about your extended family, the better assessment the counselor can give.  Not surprisingly, after a quick chat, she set to drawing this pedigree– I’m the black circle in the middle with the arrow.  Anyone who had cancer got filled in black.  A quick glance shows that there is a decent amount of cancer in my family, though several were in much older relatives and most were GI cancers.  So while that doesn’t put me in the high risk category for hereditary breast and ovarian cancer, it does suggest that there may be a familial gene playing a part in the cancer incidence in my family.

The genetic counselor who I saw did a good job of communicating with me.  Obviously, finding some sort of mutation would change nothing about my breast cancer, it had already been diagnosed and treated aggressively with a good outcome.  A positive finding may indicate more screening for me– perhaps more colonoscopies, starting at an earlier age.  It would also indicate genetic testing for my kids and my brother to see if they should undergo more frequent cancer screenings.

She also made sure that I understood that the findings. These types of screens give more than a mutation/ no mutation finding.  Some mutations are clearly linked with familial cancer syndromes, but even those just indicate more frequent screenings– BRCA mutations lead many to opt for surgery to remove their breasts or ovaries, but most organs can’t just be removed to reduce a cancer risk. The testing could also reveal some mutations that aren’t linked with anything particular– so while the gene is technically mutated, the impact of that mutation wouldn’t be known.  The third outcome would be the identification of a genetic variant.  This would mean that my gene would not technically have the “normal” sequence, but it was one of a number of already identified sequences that while not identical to normal, presented as normal. And of course, there is always the possibility that a gene’s sequence could be identified as normal with no mutations or variations.

All of that is to say, the results of this genetic panel were likely to contain very little actionable data. But given the prevalence and variety of cancer in my family, I let them draw two tubes of blood to send off to GeneDx for the Comprehensive Cancer Panel.  I doubted that it would give me any information that really made a difference for me or my family, but it’s better just to know, right?  This panel sequences 29 genes whose mutation are known to carry some increased risk of cancer.  Given my personal and family history of cancer, this test was covered by insurance, but I should point out that “covered” does not mean “free.”  Sequencing that many genes is a big job, and so it’s a justifiably  spendy test.  What was left after my insurance paid was still not an insignificant amount, but most of the companies doing this sort of testing will work with patients to reduce their cost or set up a payment plan, so it’s worth asking.

I suppose I should insert the drum roll here…  All twenty-nine of my genes were completely normal.  No bad mutations, no poorly understood mutations, no interesting variants.  Just plain old vanilla normal.  Given that any other results could have had ramifications on others in my family, I am especially grateful. I’m so glad that my genetic counselor explained well the reasons behind testing and the meaning of all the possible outcomes. But mostly, I’m glad to have just one more medical professional tell me that everything looks normal.

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